Thursday, June 14, 2012

Waiting for Monarsen

As a person with myasthenia gravis I rely on a drug called Mestinon to help me function. Mestinon is a little bit like insulin because neither medication is a cure. They help, but cannot heal what's wrong. Mestinon helps muscles and nerves communicate. Since the rest of the explanation of how Mestinon works uses imaginary words like acetylcholinesterase and cholinesterase, I'm going to skip that part. I'll refer you to the Mayo Clinic instead.

The first treatment for MG was discovered by Dr. Mary Walker. She had a patient who was suffering from myasthenia gravis. Dr. Walker noticed her paralysis symptoms reminded her of curare poisoning. Since the treatment for curare poisoning at the time was physostigmine, Dr. Walker wondered if it would help her patient with myasthenia gravis. She injected her patient with physostigmine and her patient... well, it must have looked like this:

That dog has MG. Notice how quickly the symptoms reversed? That was a diagnostic drug called Tensilon, which is similar to the physostigmine Dr. Walker used on her patient. Now this was a huge advancement. A life saving advancement. In 1934.Since 1934 medicine has advanced in thousands of directions. Hearts are transplanted from a cadaver to a living breathing person. Doctors can scan our brains and watch us think. We live in a world of cell phones and iPods. Of space stations and jet planes. In our modern world everything imaginable has advanced except for the treatment of myasthenia gravis. Mestinon, the pill form of physostigmeine and the only medication created specifically to treat myasthenia gravis was created in 1935.

That's how the experts list the side effects. My 15 years of experience would put it slightly differently. Mestinon makes me feel hot and sweaty, slightly nasuated, gives me muscle cramps, makes me cough, makes me feel like I have to go the bathroom. In short, Mestinon sucks. It sucks less than MG. But, it still sucks. It's a 77 year old medicine. Who would want to turn back the clock 77 years for their medical treatment? Anyone? I'm waiting for a new treatment.

What if... What if there was a new drug for the treatment of myasthenia gravis? What if it was a replacement for Mestinon? It has no known side effects. It works better than Mestinon. What if it has FDA Orphan Drug status? What would that drug be called? A miracle? A dream? No. It's called Monarsen.

Monarsen is a replacement for Mestinon. I am waiting for Monarsen. Perhaps a new hope is coming for me. Just like it did for Dr. Walker's dying MG patient in 1934.

17 comments:

I am waiting for Monasen too. I would have advised you to try Mytelase instead of Mestinon, far superior without all the nasty Mestinon side effects. but the drug company that makes it in the US just stopped making it.

it has been granted orphan drug status, so it is very close now. At least closer then in 1999.

Mytelase will still be avalible for a year they tell me. I don't have all those nasty side effects from it. and I take a tiny pill two or three times a day. and my strength is just steady, none of that nasty roller coaster up and down strength like I got from Mestinon.

Won't it be a great day when Monarsen replaces Mestinon? I don't know about you, but I am sick of the side effects. I am so glad you found my blog. I love meeting MG tribe members. Sorry you have to live with MG. Glad we can do it together.

Hi Marie, sorry for my late answer, i havn´t been on here for a while and didn´t realise that you had answered me.Thank you for responding :-) Hope you had a nice christmas?!I´m glad i found your block too,best wishes,Pia

Here's a little tip for those of you who experience diarrhea. My daughter gave me a bag of shelled, salted pistachio nuts for my birthday last June. My diarrhea ended. I eat about an ounce and a half each evening before bed. I used to have diarrhea almost every day, now I only get it about once or twice a month. I don't know if it will work for any of you but it can't hurt to try. I'd like to know if any of you have the same result as me.

We, the people with MG, and those of us that have a loved one with the disease, need to work together, and NOT wait for Big Pharma to respond. It's mostly about the money, and if they don't see dollar signs, nothing will happen. I was in touch with both the doctor and the lab that invented EN-101, and then with the buyer who renamed it Monarsen. At the time they were willing to sell it, but now, I'm not sure. It is sitting on a shelf somewhere in New Jersey. WE have to stand up, find a partner (of which there are many) and raise the funds to license this drug. It won't be a piece of cake, but it's not impossible. And the reward is the potential of eliminating MG from your lives!

EN-101 or Monarsen is now BL-7080 under the porfolio of Bioline Rx, the company that took it over. They are in phase 2 trials for Chron's disease and ulcerative colitis, since it's obviously more common than MG. The drug will be more successful for that financial prospect in those with gastrointestinal problems which is more common than MG. So keep up the hope.

EN-101 or Monarsen is now BL-7080 under the porfolio of Bioline Rx, the company that took it over. They are in phase 2 trials for Chron's disease and ulcerative colitis, since it's obviously more common than MG. The drug will be more successful for that financial prospect in those with gastrointestinal problems which is more common than MG. So keep up the hope.

Marie Smith

Marie Smith is a writer, cellist and talented public speaker. She is the author of Life Music: Lessons Learned At The University of Catastrophe. And her new book Life Etudes: Studies in Thriving At The University Of Catastrophe

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I am not a doctor. I do not have a medical degree. Nothing on this site qualifies as medical advice. These are lessons I'm learning at the University of Catastrophe. What I find to be correct answers in my classes may not be the right answers for you.

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